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Patients ’R Us: But do we have to be all the time?

Are you a patient? Not when you’re in your doctor’s office, but right now, as you are reading this?

Ten or 15 years ago, very few people would have readily responded “yes” to this question. Even those living with a serious illness would likely have been puzzled if anyone had suggested that being a patient could be as much a part of their identities as being Canadian, or a lawyer, or a member of a particular community. They might live with heart failure or arthritis all the time, but they were patients only from time to time.

But today, more and more people see being a patient as a part of who they are, whether they’re in a hospital or a supermarket.

There are many signs of this. Consider the proliferation of patient groups, some specific to a particular diagnosis and some more general, such as Patients Canada, which was founded in 2011 mainly to advocate for more patient-centred health care. Then there are the “celebrity” patients, such as e-Patient Dave (Dave deBronkart) whose books, Ted Talks, and website (which “advises on branding and product from the patient perspective”) are very popular. (Tellingly, he remains ePatient Dave years after his cancer was cured.) And there are the hundreds of thousands—yes, hundreds of thousands—of patient bloggers, including Amy Tenderich who calls herself a “patient pundit” and whose Diabetes Mine site is hugely influential.

Today’s newspapers and magazines are awash in stories of people contending with illness or the health care system. Health care organizations themselves reinforce the message that once you have used the system you are forever a patient. Politicians, ever alert to trends, have begun to see and speak to the patient they think resides in every voter. Donald Trump and Kathleen Wynne may have very little in common, but both have proclaimed their commitment to putting “patients first”—Trump in announcing his intention to lower drug prices and Wynne in naming perhaps her government’s most high-profile piece of legislation.

The world of health research, meanwhile, is undergoing something of a revolution. In 2013, the Canadian Institutes of Health Research (CIHR) launched its Strategy for Patient-Oriented Research (SPOR) which mandates the inclusion of patients in the conduct of research. For example, patients help choose both the questions that drive the research and the outcomes to be measured. What’s remarkable is that, according to SPOR, “patients” include all “individuals with personal experience of a health issue and informal caregivers, including family and friends.” Can you think of anyone who, by this definition, is not a patient?

This increasing focus on patients and the closely related growth in the number of people who see themselves as patients have undoubtedly had good effects. Patient stories, for instance, are getting more attention. Some have changed the way people—clinicians, politicians and the public at large—think, feel, and act. For instance, the stories of Sue Rodriguez and Donald Low have had a large impact on the debate, language, and law related to what we used to call assisted suicide and now refer to as medical assistance in dying (MAID). And practices that were entirely system- or provider-focused (for example, giving many patients the same clinic appointment time, despite the considerable inconvenience this caused them) are now being replaced by more patient-focused ones. Patients can even read and, in some cases, contribute to their own medical records.

But there have been costs.

Some people who use the health care system (for example, many with mental health or developmental conditions and many who use rehabilitation services) are uncomfortable with and sometimes reject being called patients. They think being so categorized misrepresents them as wanting or being in need of a fix or a cure. And there are still many people, some with serious chronic conditions, who see themselves as patients only when they are receiving care. Being called a patient at other times feels to them as if it keeps them tethered to a diagnosis or a health care world they find confining.

Other people, probably in reaction to capacious definitions of “patient,” have sought to distinguish “real” or “authentic” patients. They have created classes of patients, sometimes based on diagnosis and sometimes on perceived severity. Prominent blogger Carolyn Thomas has emphasized the difference between patients with acute conditions and patients with chronic conditions, saying that “acute care is NOT… what actually being a patient is all about at all.” She cited the view of some experts that chronic patients can be classified as “high risk,” “rising risk,” and “low risk,” but noted that within each of these categories are sub-categories, one of which is made up of heart attack survivors who “become the frequent flyers of the health care system.” The intention may not be to diminish some people and their experience, but it’s hard to think that isn’t an effect.

Perhaps the most serious cost is a less obvious one. The more we think of ourselves in relation to our status as patients, the more we risk narrowing our perspectives, our responsibilities, and—eventually—our very selves. If, for instance, we are asked what is most important to us as patients, we may answer exclusively in terms of treatments and wait times. But if we are asked what is most important to us as citizens, we are more likely to think beyond our own individual needs—perhaps of the health care needs of others—and of needs and values just as fundamental as good health. Some will think of social justice, others of peace, others of the health of the planet.

Isn’t it better for all of us, even as we adjust to a new diagnosis or await surgery, to see that our health, as individuals and as a society, is not just about our experience as patients and the quality of our health care? That it is also about the quality of our air and water, the availability and affordability of good food, the security of our housing, the degree to which we experience hatred or discrimination, our access to good education and meaningful work, the degree of inequality in our society, and the presence or absence of love in our lives?

Perhaps, then, it’s not a bad thing if, like me, you balk when asked if you are a patient. It’s a simple question that can, and maybe should, be hard to answer.

Frank Gavin is the chair of the Citizen Engagement Council of CHILD-BRIGHT, a CIHR SPOR national research network focused on children with brain-based disabilities and their families.

Enter the debate: reply to an existing comment

26 comments

Margaret van DijkMay 30th, 2018 at 11:18 am

Terrific column. Clear and cogent. I really like Mr Gavin’s approach to the difficult subject of being a patient. If only he is right that people think of the health care of others, the wider perspective of society and social justice when they are asked what is important to them as citizens? Most people tend think, ‘It’s all about Me.’

Thank you for your comment, Margaret. Whether people think entirely of themselves depends in part on how they are addressed. Some years ago I attended a meeting where a representative of an organization of “older adults” spoke forcefully of why people of his generation, having paid taxes all their adult lives, should have a kind of priority access to some healthcare services. I understood his concern. Many people, for instance, do have to wait too long for joint replacements. But in discussion he acknowledged that he really didn’t mean that his needs and preferences should come before those of, say, his grandchildren, even though those children have paid no taxes at all. And I think older adults who do not have grandchildren might see things similarly–if the lens through which they are looking (which is often the lens though which they have been encouraged to look) is not just a patient lens.

I am one of those “patient representatives” who is not a patient but a sometime caregiver. I do my best to contribute to the good effects that Mr. Gavin outlines. At times, it is difficult to switch between the perspectives of what’s good for individual patients and what’s good for our health system and for society as a whole. What has helped me most to maintain a broad perspective is to work in collaboration with respectful, inter-professional groups who deliberate on questions of health care from many, often competing, points of view.

Thank you for your comment, Valerie. I agree that sometimes there is a tension between what what seems best for an individual patient and what seems best for the health system and society at large, but I think that sometimes what is presented or advertised as clearly better for individual patients turns out to be not that much better at all. It may, in fact, be worse for at least some.

Such a provocative and thoughtful article, Frank. I’m Dr. Don Low’s widow, and I guess I’m responsible (because I asked him to make that video) for him being remembered more today as a patient with a wish to die on his own terms, rather than as a man who contributed oodles to the world of microbiology and infectious diseases. Don wouldn’t have wanted his legacy to be as solely “a patient”, because for 99.7% of his life, he wasn’t a patient. I think he’d be happy if he knew his words changed attitudes on assisted dying, but he wouldn’t have wanted that to be his only legacy. It’s something I still wrestle with. And yes, I was his primary caregiver, but only for 7 months of my 57 + years on this earth, and I was so privileged and fortunate, I probably have little in common with most people caring for someone with terminal cancer. Your column reminds me that when I (as a health care practitioner) see my “patients” every day, I need to remember that it’s only circumstance that brings them into hospital, and that that health issue should not, and probably does not define who they are.

Thank you, Maureen. I think one of the things that made that video so powerful was that we felt we already knew Dr. Low–not only for his expertise but for his personal qualities, including his evident compassion–from what we saw of him during SARS. So we were seeing him in his last days in the context of at least part of his larger life. And this connects with something that has stayed with me from my time as a public member of the Canadian Drug Expert Committee at CADTH. In one of the patient-group submissions a patient explained why having access to the drug in question was important to him. Unusually, he then went on to say that having friends and living a less isolated life was even more important to him. It struck me that he very much wanted us to see his illness in the context of his life and to see more of him than he was perhaps used to having seen in a healthcare environment. The frame got larger.

Great reflection, Frank. I submit that every single Canadian is a ‘patient’ right now: each of us was born using some aspect of the health system, most of us were vaccinated, some had a bad flu… each of us connected with the health system sometime. That makes/made us a “patient”. Can we patients on and off or are we a ‘patient” forever once we have entered the system and remain in the electronic (or written) records as a patient? By using the word “patient”, we immediately trigger the mental model of “disease”, and the health system is so much more than disease: the health system it’s about the illness PLUS prevention PLUS everything that contributes to the health gap. Should we call it “citizen-centered care” as it would indicate, not only that we own the system collectively, but also are responsible for it individually? Could it be “Relationship-centered care” or, as T. Hutchinson wrote, “Whole Person Care”? Each different word generates a different image with different possibilities for our health system. The old mental models prevent us from seeing other possibilities, which are so much needed to change our health system by making it better and sustainable.

Thanks for your response, Johny. I realize there are clear limitations with any term we use. In this context I certainly don’t want to use “citizen” in a restricted sense that would exclude immigrants who are not (at least yet) citizens. I like how in the U.K. “patients, system-users, carers, and the public” is sometimes used, but that is a mouth-full and might suggest that you’re are somehow not a member of the public if you are a patient or a carer …

Thanks Frank for a thought-provoking article! In some ways it reminds me of the evolution of approaches to describing disability. Twenty years ago, everyone in children’s rehab used first-person language, “She has a disability” vs “She is disabled.” The former seemed to convey the idea that a disability is just one part of the child, and doesn’t define them. Now, disability advocates in the US have launched a social media campaign called “Say The Word — Disabled.” They believe person-first language was developed by parents as a way of distancing disability from their child. As disabled adults, they take pride in their disability identity and want to be called disabled. I remember, too, that 20 years ago in children’s rehab we didn’t use the word “patient,” because we thought it suggested a passiveness — that something was being “done” to a child by an “expert” vs. the idea of partnership between professionals and patients. However, with the rise of family-centred care, which now, seems to generally be referred to as patient-centred care, it seemed to me that patients were taking a new ownership of the word ‘patient.’ And that in its new iteration, it no longer conveyed the idea of passiveness or submission, but of being an active and informed partner in health care. You do make good points about taking the idea of wellness out of the narrow sphere of health-care to look at the many determinants of wellbeing. Thanks!

Thanks for your response, Louise. I agree that the shifts in language over time are important to attend to and reflect upon. I’m curious about your use of “wellness.” My intent was to reiterate–I hope in a somewhat different way–the point made by many that health depends on so much more than health care. In my mind wellness is included in a broad understanding of health. Do you see it as in some way outside health?

Good overview, Frank. I suspect that the answer to your opening question “Are you a patient?” would be a definitive “It depends!” from most people who live with chronic illness every day. Those who don’t live every day with this, or have had only (brief, temporary) acute care procedures to compare to, may find it tempting to dismiss or deny a label of “patient” in others.

I can’t speak for all those who do self-identify as “patients” of any sort, but I’m guessing that even those, like me, who live with ongoing debilitating chronic illness symptoms and significant daily reminders of “patienthood”, would say that yes, of course, they are patients – but that’s certainly not all they are. As Maureen Taylor astutely commented here, being a patient “does not define who they are”.

If you expanded your question to “Who are you?”, you’d probably get a far more accurate and broad-based assessment more to your liking. Most of us would respond by mentioning a number of personal identifiers, for example: I’m an author, a blogger, a speaker, a sister, a friend, a West Coast homeowner, a cyclist, a baker of focaccia bread, and grandmother to the adorable Everly Rose.

I am many things. One of those things just happens to be a heart patient. But I don’t “balk” at being asked if I’m a patient. It’s simply a statement of fact (like answering the question, “Are you a coffee drinker?”)

Thank you for your response, Carolyn. I have read your blog for a good while and have always found it thoughtful and provocative–in the best sense.

I agree that people, including those who live with very similar conditions, will answer that question in a variety of ways. That variety of responses is worth attending to. And I think the different question you propose is a more fundamental one.

At least in many of the environments I’m familiar with being a patient is a much more important and essential part of many people’s identities than being a coffee-drinker or a film-lover or …. And from what I’ve observed, this isn’t necessarily correlated to the severity or the chronicity of their condition. My sense is that the distinction between living with a health condition—I’m not using “disease” because many conditions of consequence are not diseases—and being a patient is steadily narrowing. I wonder if others think so too and what the consequences might be if that’s the case.

It seems clear to me that people are being encouraged to see themselves as patients, actual or potential, and to make decisions (what to buy, how much to spend, how to vote, and where limited public money should be spent—and thus where it should not be spent) with their patient hats firmly affixed. One result is that public health (including activities related to prevention) and other areas that have a demonstrable effect on people’s health fall down the list of priorities.

Thanks very much for this, Frank, and for your kind words about my blog. I’m curious about the source of your statement that public health becomes a lower priority when we’re wearing our ‘patient hats’ (personally, I don’t have an actual hat like that yet – maybe I should go shopping for one?!)

I can, however, think of a number of preventive public health initiatives off the top of my head (hand hygiene programs to reduce the spread of hospital-acquired infections, for one) where patients (i.e. the ones wearing the drafty hospital gowns) are actively encouraged to directly remind docs/nurses/techs to wash their hands before touching them as part of the program. Sometimes, those with lived experience and skin in the game – literally! – are those who are most aware of public health gaps, and most willing to help fill them.

Carolyn, I was not being literal when I referred to patient hats, but I have myself often myself worn a patient hat as a member of a patient and family advisory committee, a research team, and a district health council, as a “patient reviewer” for the BMJ, etc. And I have often been present when people have said they were there to represent “the” or “a” (big difference, I know) patient perspective, speak with “the patient voice” or tell a or the “patient story.” In all those cases and more, people didn’t need anything on their heads to indicate what hat they were wearing. And in many cases, if someone they regarded as not a “real patient” said something about his or her patient experience, they made sure to indicate what hat that person was really wearing. In fact, I’ve heard so many “hat discussions” that my head spins when another one begins.

The particular example I had in mind about resources was in documents prepared by the Institute for Clinical and Economic Review at Harvard. One of the jurisdictions they reported on was Massachusetts where over a recent ten-year period expenditures on health coverage went up 59% while expenditures on public health declined by 38% and on mental health by 33%. Of course, it’s important to look behind and around stats like these, but I guess my point is that from a patient perspective prevention is to a large degree about infection control in hospitals–a hugely important issue as the IOM report highlighted–but from a citizen’s perspective it is also very much about immunization, clean water, etc.

My contention is none of us should have to make an absolute choice between seeing through a patient lens and seeing through a citizen (or public) lens, in large part because patients aren’t any less citizens/neighbours/members of communities because they are patients. I recommend progressive lenses.

“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

― Susan Sontag, Illness as Metaphor

Frank, thank you for offering insights about the limitations of being defined by illness and suffering … each of us is indeed much more than the patients we may be during “the night side of life”.

It’s more general. Humanity is coming to believe that we are helpless, victims, overwhelmed, unable to cope, unable to understand, and especially, unable to decide. We are being systematically infantalized.

There is truth in our perception. We don’t know what’s true or who to trust. Fake news. Criminals in office. Cheap products stamped with expensive brands. Big companies screwing us, hiding it with obfuscation, again and again. So many big problems, so many big companies…. We are all confused, all facing them almost alone. We feel helpless.

“Maybe the next government will finally fix all this. Yeah, I get to vote, every 4 years, to pick one of 3 guys. I just hate that there’s too much for me as a voter to figure out, and I have to squeeze it in a vote. I feel helpless.”

“Somebody please figure this out and tell me what to think!! Good, the news is telling me what Canadians think, they’re interviewing a Canadian guy, with a simple position, and he’s sure of himself. That’s us. That’s me. Safe among us.”

This isn’t just a health care problem, this is the health of society. Fortunately, technology can solve these problems. Unfortunately we’ve got to get a bit organized to get organized, whose doing it? Interested? Get in touch.

Thank you, Frank Gavin, for a very thoughtful and timely piece. I’ve been wondering the same thing recently – why are we so bent on medicalizing ourselves and our loved ones in order to have a more prominent seat at the health care table. What are we losing by embracing this perspective of ‘patient first’? I’m coming around to the views of Cormac Russell of Nurture Development (Asset based Community Development in Europe). Read this and let me know what you think – http://www.nurturedevelopment.org/blog/abcd-approach/part-4-dont-health-problem-village-problem/ Is our problem that we consider the patient as an individual rather than in the context of community? We are fixated on the singular experience when in reality, we all live in families, in the community, under the influence of a myriad of systems (health systems being just one). I am a patient sometimes but only when I need the help of medical services. I am a citizen all the time. Same goes for my son who lives with the realities of a severe disability and medical complexity. His realities do not make him a patient all the time. He is a citizen who will vote later this week. The question remains, for those of us who are deeply committed to making our health care system more responsive to the needs and aspirations of the people it serves, how do we best present ourselves in order to maximize the power of our voice at the table?

Thank you for your response, Donna. Thanks also for the link, which I clicked on and then found lots of great ideas. I’ll return to it again. One thing is clear: we often want to believe families are sufficient (or very close to sufficient) and we try hard to make it so, but at the end of the day–and sometimes well before then–we realize we need communities. I heard Ian Brown give a great talk on this topic at the CAPHC conference in Halifax in 2016.

Wonderful and very rich article Frank, congratulations. In addition to a most thoughtful and thought provoking piece, you have stimulated a very important dialogue among many, bringing diverse and very important responses to your question: Patients ‘R Us; But do we have to be all the time?

As a retired health care administartor, nurse and a frequent flyer with my beloved and late husband Brian, there are many appropriate boxes to be checked.

Thanks for this rich and thought-provoking article. Having completed the SPOR course, I see this discussion of ‘what is a patient’ as a stimulating and necessary part of the evolving and still burgeoning paradigm shift – from paternalistic to patients as partners/collaborators in their (our) own health. The myriad patient experiences, coupled with our individual complexities, speaks to your observation about the spectrum of wellness and the Social Determinants of Health that seem rarely acknowledged as key. Considering myself fortunate to have the most of the e words required for New Patient: engaged, empowered (as the situation allows) enabled. However, the essential ‘e’ word I also feel is rarely acknowledged, but most certainly needed – both day-to-day and interacting with the health system: Energy. Thanks again for kicking off this convo. kathy kastner http://www.bestendings.com

Thank you for this excellent article. It captures many thoughts that I have had for some time. I am a citizen – an engaged citizen trying to take ownership of my own health and also contribute to the health of my community. Health is a means to an end.. occasionally being a patient is part of the journey.

This document is provided under the terms of a CreativeCommons Attribution Non-commercial Share Alike license. The terms of the license are available at: http://creativecommons.org/licenses/by-nc-sa/3.0/. Attributions are to be made to HealthyDebate.ca, a project under the direction of Dr. Andreas Laupacis, at the Keenan Research Centre, Li Ka Shing Knowledge Institute of St. Michael’s Hospital.